Living With Wolfram Syndrome – Adam Zwan

Tired But Can’t Sleep

Have you ever experienced full body exhaustion but cannot fall asleep?  Fellow Wolfram syndrome patients may know exactly what I am talking about.  A snapshot of this sleepless exhaustion is lying in bed with a severe case of yawning while closing the eyes as tight as possible wishing for at least a few minutes of sleep. 

It has been suggested that I participate in a sleep study so that some solutions to restless nights of sleep can be developed.  However, part of my problem is not only the sleep patterns but the health issues I struggle with.  Due to Wolfram syndrome, I have to wake up each night to catheterize relieving discomfort, wake up every two hours to check my glucose, and try to relax a cold body that sometimes deals with shivering.  As always, it is not simply solved with one thing like sleep medication but bigger helping hands like an accurate continuous glucose monitor (CGM).  Something like a Dexcom CGM would relieve my body from having to wake up every two hours and relieve my alarm clock from mandatory overtime.  The only thing allowing me to continue daily routines is a 20 minute power nap every day.  It may be possible to obtain a Dexcom sensor in the future but until that day arrives I will continue going to bed each night eagerly awaiting the 5:00 A.M. alarm signaling that it is gym time.